Having a Voice in HIV Decision Making
• Because of the hard work of HIV advocates over the years, most agencies involved in HIV work now include people living with HIV – Local and national HIV research networks, service organizations, and planning councils get advice from people living with HIV on what’s important to the HIV community through advisory groups
• Information is mostly about US
Community Advisory Boards (CABs)
• ASOs, clinical research sites, and some health centers have CABs
• Each type of CAB includes people living with HIV
• An ASO's CAB can provide valuable comments from people living with HIV about the services the organization offers
• Some CABs are very active; others meet infrequently and have little effect
• Government-funded clinical trials in the US must set up CABs. CAB members:
– Offer comments about studies
– Get research results and up-to-date information about ongoing trials
– Advocate for study participants; help sign people up
HIV Planning Councils and HIV Care Consortia
• US-specific
• Guide spending of money from US Ryan White Program
• Some appoint members; others have more open membership
– Members may include medical providers, public health officials, staff from community-based organizations, and people living with HIV
– Even if you are not a member, you can present about the needs of your community to the council or consortium
• Contact local council or consortium to find out about the application process
HIV Planning Councils
• Located in urban areas with a large number of people living with HIV
• Set priorities for distribution of government funding based on services most needed by local people living with HIV
• Members attend full council meetings regularly and usually participate on at least one council committee
• Time commitment: 4-10 hours/month
HIV Care Consortia
• Regional or statewide planning groups in more rural areas
• Provide a broad-based community response to the HIV epidemic in their region
• Ensure that high-quality, comprehensive health, support services are available to people living with or affected by HIV
• Meet at least every three months; many members participate on at least 1 committee
• Time commitment: 1-5 hours/month
Institutional Review Boards (IRBs)
IRBs are also known as Ethical Review Boards (ERBs) or Independent Ethics Committees (IECs)
• Exist internationally
• Protect study participants by making sure trials are safe and ethical
– an IRB can stop a trial that is not run properly
– Made up of health care providers, lawyers, statisticians, researchers, clergy members, ethicists, community advocates, others
– All US research hospitals or centers conducting studies must have IRBs
– All trials are reviewed and approved by the IRB before they begin
• Other countries also have ethics committees
– Design and function vary by country
Institutional Review Boards (IRBs)
• As a member of an IRB, be prepared to:
– Spend many hours reading trial designs, attending meetings, talking with other IRB members
– It is important that people living with HIV be involved in IRBs; other members and researchers need to hear your concerns and priorities
– Time commitment: big. An IRB is probably not the easiest way to get started in community advocacy, but it is an excellent way to learn a lot!
• To find out about IRB opportunities and application requirements, contact clinical trial sites where you live
• To locate HIV clinical trial sites near you, go to:
– CenterWatch (worldwide)
– HIV/AIDS Clinical Trials Networks (US only)
www.thewellproject.org
Boards of Directors (BOD)
• All not-for-profit ASOs have a board of directors (BOD)
– Legal and financial responsibility for organization
– Sets policy, hires and fires the executive director
– Makes sure the organization is serving its chosen mission
– Time commitment: 2-4 hours/month – meetings, activities
• Many boards require members to give or raise a certain amount of money
– Some BODs make exceptions so that they can include people who have valuable things to offer but cannot help raise money
– If you would like to join the board of a local ASO, set up a meeting with the board's chairperson (sometimes called the president) or the organization's executive director
www.thewellproject.org
Tips for Successful Advocacy
• Community involvement is an important way of helping HIV groups serve their purpose
• Being an advocate on a board/planning council can be very rewarding
– It allows you to give your opinion and stand up for what you feel is important to you and your community
• However, it also adds extra responsibilities and takes up some of your time
Tips for Successful Advocacy
• Tips to help balance your physical and emotional health with your advocacy efforts:
– Remember, you and your health come first
– Think about what you want to achieve before joining a group
– Limit yourself to only those projects you can complete
– Work with people who understand the issues and support your efforts
– Try not to let disagreements become personal
– Learn from long-time advocates
– Think before you speak!
– Do not to let advocacy help to give yourself power over other people
– Recognize that you have a voice. Your experiences are valid!
– Try to get people with diverse experiences onto the board or council
• To learn more about these topics, please read the full fact sheets: – How to Be an Advocate for Yourself and Others – A Place at the Table: Having a Voice in HIV Planning and Decision Making – Stress Management • For more fact sheets and to connect to our community of women living with HIV, visit: – www.thewellproject.org – @thewellprojecthiv.bsky.social
– www.facebook.com/thewellproject
– www.instagram.com/thewellprojecthiv/
– www.threads.net/@thewellprojecthiv
– www.youtube.com/thewellprojecthiv www.thewellproject.org